S'mores

Teddy has never liked s'mores. He has attempted them and handed them back to us, made faces and refused them. 

So, we've adapted and given him deconstructed s'mores minus the marshmallows, which were clearly the culprit because the kid devours chocolate, graham crackers and peanut butter. (Hey, peanut butter is a s'more staple in our household.)

It's not that he's entirely against marshmallows. He's eaten them on occasion plain, and he definitely loves rice crispy bars. I think it's a texture thing with melty marshmallow, so we've just adapted and it's worked just fine ...

... until the other weekend when he kept trying to make a s'more. Since Teddy doesn't talk, there's always a little bit of trying to understand if our interpretation is correct. At first I thought he wanted a deconstructed s'more, but he clearly wanted to cook a marshmallow. So we did that and made a s'more. 

And he shocked me by eating it. (He still kept holding out his hand to have me wipe off the extra marshmallow stuck to him, so I think there's still a texture thing he's not completely loving.) Then he proceeded to make a second s'more and eat it.

His first-ever s'more that he actually ate!

He repeated this the following weekend, so it's safe to say he now enjoys s'mores. 

We joked it was peer pressure because we had a friend along the first weekend devouring s'mores. It's neat, though, to see him enjoy something in a new way and be a full part of the campfire experience.

Guess Who's Back?

... in school, that is.

Teddy's back, tell a friend. Oh wait, his best friend is in his class and rides his bus, so his friend already knows. 😉

All smiles for the first day of school!

Teddy is in 7th grade (ummm, how is that possible) and loves being back in school. He was so darn excited about the prospect of:

1. Going back to school
2. Seeing all his friends
3. Specifically seeing his best friend Mikey every day
4. Riding the bus
5. Going back to his after-school programming

And as I type this, I hear endless giggles as he works with his new at-home provider we have 2 days a week. So that either means that's going great or he's being silly doing things he shouldn't (or both, because that's also a valid possibility.)

Thus far communication from school has been good, which is so refreshing because we've worked hard last year to get into a good routine. The bussing has been a challenge, with him being picked up late every day (and therefore arriving late to school), and today he magically arrived home 15 minutes earlier than scheduled. So unfortunately we're the squeaky wheel calling the bus company every morning after the bus is more than 10 minutes late and calling the special education office who coordinates the bussing. While we don't like to be the pain, we also know how hard it is for Teddy to wait for the bus and how disruptive it is for him (and us) when he's picked up late. 

Aside from that hiccup, the one thing that's been on my mind last week is the inherent value we bring as humans to the world. It was on my mind as Teddy headed back to school, and so many people were so genuinely happy and excited to see him again. It's not because Teddy is a star student, super helpful in the classroom, leading by example with class participation, excelling at academics, etc. In terms of what society often values in productivity (being a productive member of society), Teddy doesn't check those boxes. But he is inherently valuable as a human being for who he is. He is enough (and if I'm being honest, some days more than enough). 

It's something I'm trying to convey to AJ, who struggles with his self-worth being tied in his grades, productivity, etc. It's something I think most of us struggle with, but it's so easy to see in Teddy. His presence, who he is, is what people value in him. It's why they're excited to see him. It's a pretty cool thing and yet another way I learn from life with Teddy.

Friendship

As parents, we want our children to thrive physically, emotionally and socially. We want them to be accepted and embraced for the wonderful, quirky little humans they are. We want them to have friends, good friends.

Over the last two years, I've had the pleasure of watching AJ thrive in middle school with an incredible friend group. He's found his tribe of friends who share common interest, laugh hard together, definitely fit together in their own wonderfully weird way and have each other's backs. It's been such a joy to get to know these boys and to see AJ have the friendships he's developed. And, boy, is he a good friend, thoughtful, kind and empathetic.

With Teddy, it's always a bit of a mystery what happens outside the realm of our supervision. We know he's had playdates with our friend's kids and that he's a social boy who believes everyone is his friend. He's had two friends from the bus and school through the years who have done play dates, and he's certainly enjoyed those. But this last year has been incredibly special in terms of friendship.

At his after-school programming, he became friends with another younger boy. Since I don't do after-programming pickup most days, I was quite confused at the library when all of the sudden a woman asked me if Teddy was Teddy. I said yes, and she told her son that Teddy was at the library. This little boy screamed Teddy's name, ran across the library and scooped him into a hug all the while Teddy was grinning and excited to see him. I told the lady I needed a bit of help, and she clarified her son and Teddy were friends from this programming. It was just cool to see that relationship.

The other relationship that has blossomed into a full-on bromance is Teddy and his friend Mikey. What started as classmates and friends at school has evolved into all sorts of play dates this summer, playing baseball on the same team, shared dinners and all sorts of fun. No matter how much time these two spend together, it is never enough! Mikey is constantly asking what Teddy is doing, when he'll see Teddy and if Teddy can come play. And Teddy is always searching for more of Mikey, asking in his own way to include him in activities and literally bouncing up and down with joy to see him every time. 

Baseball besties made this season even more fun!

It was interesting hearing from Mike's parents about their introduction to Teddy. They said Mikey constantly talked about Teddy, how much fun they had at school, how they sit together, and nonstop chatter about Teddy. But they never got details exactly on what they did together or what they talked about, so they weren't quite sure what to expect. They reached out to us through a letter sent home on the bus with Teddy how they've heard all about Teddy and would we like to get together. I was so tempted to be sassy and say we'd never heard a word about Mikey but figured that wasn't a good way to start a friendship. You can imagine that when they learned Teddy is non-speaking that clarified for them why they never heard what the boys discussed. 

I'm so glad they reached out because the two boys are such a joy to watch together, and they make each other so darn happy. Mikey talks enough for both of them, but they understand each other with Teddy's signs and gestures and simply get along. 

For a child like Teddy, it's incredibly cool to see this type of friendship develop. I'm here for all the best friend moments! (No, really, I still have to supervise Teddy. But dang, this is mostly joyful to supervise.)

Happy Belated Birthday!

Two weeks ago we celebrated Teddy's 12th birthday. While 12 may not seem like a milestone, every birthday for Teddy feels like a milestone because of the medical literature that existed when we got his diagnosis when he was 2.5 years old.

At that time, there was so little known about his disorder (at the time called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1, now known as PIGN-CDG) that Google returned less than 10 results. And tucked into those results was the life expectancy of 3 years.    

Imagine reading that when your child is only 6 months away from turning 3, wondering why he has this invisible expiration date that you didn't know existed, contemplating how your relatively healthy child could be dead in months. 

Needless to say, the medical literature was wrong. While his disorder does unfortunately take away far too many of our children far too early from complications from seizures, respiratory illnesses and a world that is too hard for those sweet ones with medically fragile bodies, others are surviving and thriving well into their 30s and likely beyond. Given that this disorder was only discovered in 2011 and that there's so few known cases, that's why we aren't aware of older individuals, not because they don't exist.

So that's why birthdays feel monumental. At times they feel challenging because it's hard to know what to get Teddy some years. Other years it's a reminder of another year of age, yet developmentally not being where his peers are. We never know quite what emotions will arise with birthdays. 

But this was a sweet year, a day filled with a bunch of family and friends. A day spent playing with all his people, loving that more than any of his gifts, though he did great opening his gifts. A year with lots of ice cream gift cards, so he and his best friend can keep visiting Baskin Robbins like it's going out of style. 

Oh, and there was dancing and a giant dinosaur balloon to ride ... until it died. But it's probably an OK thing that it died because Teddy was about to make all the adults ride it. 

Birthday boy with his toys. 

Miracle League - 2026 Season

When you have a child with disabilities, you discover an entire world that you didn't know existed. I'm so grateful we are living in the era we are in terms of access to services, resources and opportunities to enjoy childhood for Teddy. There's so much that exists now that I don't believe existed during my childhood. 

One of the amazing opportunities is Miracle League, which provides kids the chance to play baseball on an accessible field partnered with amazing volunteer buddies who support their needs. Year after year, Teddy has had great buddies, and this year Sam did amazing with him. From the first game, Sam was comfortable interacting with Teddy, guiding him where they needed to go and supporting him to bat and run the bases. It is so cool as parents to see these young volunteers shine with how they interact with our children, and Teddy lit up when he saw Sam each week.

Sam + Teddy = All smiles!

This season was extra fun because Teddy has become best friends with Mikey through school this year. As parents of a non-verbal child, it took us a while to realize Teddy had this best friend, but we eventually figured it out. These two boys cannot get enough of each other. It doesn't matter if they spend hours together during the day, they're constantly wanting to hang out again with each other. 

So they were on the same baseball team, which meant every Tuesday we got to hang out together at the ball field. Teddy loved having his friend with him to bat next to him, play together in the outfield, get ice cream before or after the games, share supper before and ride together to games. Their friendship made this season extra sweet for all of us.

These two are something else together!

We're lucky that Teddy has such amazing family and friends. Every game came with a cheering section, complete with grandparents, great aunts and uncles and our adopted kids or some combination thereof. It's truly a blessing to have family and friends who show up for us to share in the ordinary moments of summer that really are the extraordinary moments of life. 

World CDG Day Recapt

It's been a month since World CDG Day, and I wanted to share how incredible the day was. I had every intention of creating a collage of all the support for Teddy and others with green shirts but simply never got there. But every picture shared, every shirt worn, added a bit of awareness and reminded our family how much love there is for Teddy and our entire family.

It was a day of worldwide connection with our other PIGN families through the blog post sharing a number of our children, along with a video showcasing even more. It's incredible to see how large our group has grown since we first found it in December of 2015 when there were about 5 families.

What made my heart nearly burst with pride, though, was AJ's advocacy that day. He spent the month prior coordinating with everyone from the principal to all the 7th grade science teachers to Teddy's teacher to arrange presentations for all 7th graders during their science classes. He was able to share all about CDG, talk about what it's like for Teddy and him and promote the research and fundraising project he's doing for the research. 

AJ is developing really good speaking skills for his age.

AJ did phenomenal! He presented 6 times, spending most of the class period with his presentation and the really good QA sessions that followed. The principal even joined for his first presentation! It was really neat to hear the thoughtful and insightful (and random) questions from 7th graders. 

One surprise in his presentation was that he added a slide about bullying. AJ was brave enough to share his personal experiences in feeling hurt and sad when others laugh at Teddy's vocalizations in the hallway or make comments, even if they don't intend to be mean. I thought this was incredibly brave of him.

At lunch AJ and Teddy teamed up to hand out CDG cookies to all the 7th graders. Teddy did amazing in handing out cookies with AJ's support. One of the coolest things was that a couple boys came up, and assumed they were coming for cookies. I told them they'd have to wait until their table was dismissed. They said, "We're just coming to say hi to Teddy like AJ encouraged us to do." They smiled, waved and said hi before heading back to their table. 

Teddy loved his job of handing out cookies.

It was such a neat experience, and AJ is already excited about possibly presenting to all the 7th graders again next year as they will be Teddy's peers.

It was really special to be a part of this day.

Improvisation

This past weekend I noticed Teddy got a bit creative to entertain himself while we were driving. He took the string of his lacing toy, inserted one end into the charging port of his phone and inserted the other end into his ear. He created his own ear buds for his phone, a modern spin on the old-school telephone game.

This kid cracks me up.

Really creative approach to make your own headphones.